CSN Login
Members Online: 7

You are here

newly diagnosed Gleason 6 65 years old

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Hello all, I was diagnosed 2 days ago with prostate cancer.  I am in the confused, shocked mode.  I am looking for reading material to help me discern treatment options.  Thanks, Denis

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

Dennis, welcome to the board, and sorry that you have to be here.  You might share more information so that the guys can help you, and everybody is in shock and confused in the begining.  The good news is that almost always Pca is much less of a problem than what we first thought.  As far as treatment goes, there is a fountain of information here on this board from guys who have done that.   We will need a lot more information, but in the meantime go thru the board and read the posts that are closest to your case.  Good luck.  Love, Swami

hopeful and opt...
Posts: 2218
Joined: Apr 2009

In order for us to help you with information, you need to let us know your history, that is what led to a biopsy; PSA history, any thing felt from the digital rectal exam (figer wave), how many cores were taken in the biopsy, how many were positve, of those that were positive what was the percent involvement (how much) of   each core that was positive, any other finding from the biopsy. Any other diagnostic tests?

In many cases with a Gleason 6 ,  Active Surveillance only is the preferred treatment, that is no active treatment until needed (which can be a lifetime). I for one have been doing AS for nine years at this date.

Get back to us

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

I have had a couple of years of PSA low 4s, this last year it went to 4.7.  A physical exam should enlarge but smooth prostate.  Mri should areas of concern on one side. Needle biopsy, 13 cores, showed four with cancer left and right side.  Biggest was 5mm.  All Gleason 3+3.

I think the stage is considered 1c.

I am a bit in the overwhelmed stage, trying to figure out how to decide on treatment.  Active surveillance seems the right course for year one while I get educated and find more info. 

I really want to find someone(s) to talk holistically.  The surgeon talks cutting, I meet with oncologist Tuesday and I am sure their focus will be radiation. I have one friend who has bladder cancer and he is going to cancer center of America and loving their approach. 

Feeling a bit lost. 

Thanks, Denis

Mulhaley
Posts: 12
Joined: Mar 2017

For what it's worth: I am 61, diagnosed early this year with adenocarcinoma in my prostate, Gleason 4+3, PSA 6.3 when I went ahead with the MRI and biopsy last March.  It had been climbing slowly for about 5 years or so.  I chose LDR brachytherapy (radioactive seed implant) followed by 35 sessions of external beam radiation at the Radiotherapy Clinics of Georgia, which just happens to be a short drive from my home near Atlanta.  I finished up treatment this past Friday.  I have to say I am well pleased by the lack of troublesome side effects at this point--I have no major problem with incontinence, meaning I can hold my urine, though there is sometimes minor leakage following urination (that's been true to some extent for years anyway), no bowel problems, no burning or pain on urination, and no trouble with emptying my bladder when I need to.  I do have increased frequency of urination, and a somewhat weaker stream.  I have a degree of ED, but that was true before all this happened---I have been under a cardiologist's care for twenty years, and have type 2 diabetes as well, so in that department there was trouble anyway.  It may be a bit worse now, but I am not surprised by that.  I had some fatigue which kicked in at around 4 weeks of external radiation, but it wasn't debilitating.   If you are still reasearching options, I would recommend you at least speak to someone at RCOG about their ProstRcision program.  My first post-treatment PSA test will be in a couple of weeks, and of course the efficacy of treatment is what it's all about, so I don't have that information yet, but their track record is apparently pretty good, according to the data they report.  I've spoken to a few guys who went through the program ten and more years ago, and they are satisfied with their results.    The lowest PSA level after radiation is expected after 18 to 24 months, so I will be monitored frequently for the next few years.  I was very well treated by my radiation oncologist and the staff.  Hoping for the best, and hoping for the best for you and all the folks here on the board.   Their website is  http://www.prostrcision.com/ 

 

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks for sharing your journey.  I get hope from your story.  I definitely will add your referral to the decision tree.  I wish you a speedy recovery. Thanks, Denis

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

Welcome, Denis

I will just at random comment on a few of the variables that the other guys have already discussed. 

1. It is possible that you are Stage 1t, but that is far from established yet.   I was believed to be t1 when diagnosed, but the pathology study of the gland showed two months after the biopsy, when I had surgery, to be a fairly well-involved t2 instead.  I also was a Gleason 6, and had only 1 core positive in a 12-core biopsy.  I never had I had a PSA  over 4.2, but had a significant vector, or doubling rate: the numbers went up every year, never remained the same. Every DRE was completely normal -- the doctors could feel nothing abnormal "from the rear" of the gland. ;)   A DRE only provides information regarding the part of the gland adjacent to the rectum, obviously; it gives no information regarding the other surfaces of the gland. But it can also tell an experienced urologist a lot about the approximate size of the gland.   The tendency in biopsies, if they are not completely accurate, is to UNDERESTIMATE staging, not overestimate it.  That is, false negatives are much more common than false positiives. But this is a generality, and anything is possible.

2. My urologist told me straight away that I was a good candidate for A/S, at 58 years of age.  I knew I would not be comfortable with A/S and chose to proceed with surgery after meeting with a radiation oncologist first, and speaking with my medical oncologist who treated me in 2010 for Hodgkin's Lymphoma (Lymphoma is totally unrelated to PCa -- totally different cells and malignancy.)

3. You mentioned Cancer Treatment (?) Centers of America.  They overall have a fairly good reputation, certainly very competent.  They are not a cutting edge provider; not a Sloan Kettering or MD Anderson or Cleveland Clinic by any stretch, but still a good choice in most cases.  I have heard (indirectly) that they have a personably style, which is lacking in many places.  Certainly convenience and rapport are important issues, and they have I beleive 5 regional hospitals around the US. 

4. You apparantly have incipient, unaggressive disease.  PCa is usually very slow-moving.  You have time to take your time and research this calmly and systematically. Do not decide on a treatment option until you have had a variety of assessments from at least two or more doctors. And do not get "second opinions" from your first doctor's partner, who works in the cube adjacent to his, because that is really just the same opinion coming out of a different mouth, in many instances. Get your second opinions from doctors in different institutuions of practices.

max

ASAdvocate
Posts: 112
Joined: Apr 2017

Can you provide us with more details from the biopsy pathology report? How many cores were taken? How many were positive? Where they all on one side, or both? What was the percentage of cancer in those cores?  What is your psa? have you had an MRI?

The NCCN standard for most Gleason (3+3) is active surveillance, which is no immediate treatment, but regular follow-up monitoring. I have been on AS for eight years, and hope to die of something else without ever needing to treat my prosate cancer.

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, I am surely going to using AS for at least a year.  Studies seem to suggest that at my stage, see prior post, there is no harm waiting a year. Still wrestling with the thought that I have cancer. Appreciate your hopeful post!  

Thanks, Denis

hopeful and opt...
Posts: 2218
Joined: Apr 2009

All of us who are diagnosed experience shock and all those negative feelings. This includes those like you who have been diagnosed with low aggressive, low volume disease who are ideal candidates for Active Surveillance. This shock usually last a few months.

 

Be aware that many do not consider those who have been diagnosed with low volume Gleason 6 as you have been,  to have cancer. In fact studies have shown that there is no metasis with with those who only have Gleason 6. Here is a very recent presentation that this discuss this, plus other issues of Active Surveillance.  Dr. Laurende Klotz of Toronto Canada is the pre-eminent expert on Active Surviellance. Here is a very recent presentation that he has done that lasts about 45 minutes that you,  ASAdvocate and others with interest will find worthwhile to view.

https://www.urotoday.com/video-lectures/advanced-prostate-cancer/video/mediaitem/778-embedded-media2017-06-02-13-54-01.html?utm_source=newsletter_4652&utm_medium=email&utm_campaign=uroalerts-prostate-cancer-weekly

There are institutions that specialize in monitoring those with with low risk disease, who pursue AS, so it is important for you to interview with one of these. There is new technology that  is now available where the patient first has a multiparametric MRI, a radiologist ranks any suspicous lesions found, and then a biopsy is given using three dimensional capability to target the MRI lesions found. One manufacturer of these biopsy machines is "Artemis". More confidence can be placed on the results of this technology than the standard random biopsy done in the local doctors office. Additionally, with the advanced technology the doctor can go back to the exact area of the prostate that is of concern.

if you click my name to the left, you will see exactly what diagnostic tests i have done, and the results. Additionally I have listed details of various tests that are available, and information about AS

Best

H

PS You mention that you are considering AS for a year, why not a life time, and not be subjected to the possible side effects of the various Active treatments that are available....these side effects can be life changing and even cause death in some occassions.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks for your note and words of encouragement.  I definitely will investigate your suggestions.  I say a year because I am in the infant stage of understanding whats going on, less than a week since the doc said I have cancer.  I know there is great research and that there are still many unknowns about this disease.  I believe the one thing I can control is to educate myself.  Thanks for your hope! Denis

VascodaGama's picture
VascodaGama
Posts: 2957
Joined: Nov 2010

Denis,

I think you doing well in considering AS as your starter. It will give you time to read the rest of the menu, becoming acquainted with PCa condiments and treatment spices, and then; decide in an option. You seem to be interested in an holistically aproach for caring the issue but I hope that you do not mean to start taking snake-oil like therapies in the hope of solving the problem. Restrictions in diet help in preventing worse issues but do not cure. You can find many supplements on supermarket's shelves invoking high benefits without any truthfully verified result. Some were found to include substances in the mixture that are in fact used in hormonal treatments for prostate cancer but much more expensive. 

Your next move should include the means to verify the data already collected that will serve you with the best diagnosis (your real present status). In your next consultation ask for a clinical stage. The biopsy sets you with T1c (positive for cancer). This easily can be pushed up to a T2c (depending on which doctor is doing the digital rectum examination, DRE), as you got tumours in both lobes. Surely your shared info seems to refer to a low risk, not voluminous case that is contained and probably proper for AS. 

I recommend you to advance researching and that you involve your family in the decisions. PCa affects everyone even your children that share the same genes. Boys and girls are at risk 4 to contract prostate and/or breast cancer.
As many commented above, PCa makes us anxious in the beginning because we are dealing with the unknown. Many think in death but in comparison with other cancers, prostate cancer is considered a slow growing cancer (five times lesser than breast cancer) that provides means and time to the patient for educating on the matter. I would recommend you to read some books (latest editions), including treatments in case you opt for a radical;

Active Surveillance for Localized Prostate Cancer: A New Paradigm for Clinical Management, by Laurence Klotz;

Prostate Book, by Dr. Peter Scardino, SKCC;

Guide to Surviving Prostate Cancer, by Dr. Patrick Walsh, Johns Hopkins; 

A compendium on Prostate cancer and care;

http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

Ideas for a List of Questions to help in consultation

http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-talking-with-doctor

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

My guess opinion on your comment about the constant high PSA level ( 4.0 to 4.7 ng/ml) in the last three years, is that you have no hyperplasia, meaning that the serum is a cause solo of the cancer, with a long doubling (non aggressive). I wonder about the location of the positive cores. Can you provide the contents of the pathologist's report?

Best wishes and luck in your journey.

VGama

 

 

 

 

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks for the well written and informative post.  Holistic to me is a well-balanced mind, body and spirit approach to health.  Nutrition, exercise, learning, and scientific based medicines and treatments. I am by trade an educator/researcher so I am on the learning path which includes reading, talking with knowledgeable folks, and seeking input from experienced folks like you.  

My cores were left lateral base 5mm of 1.7cm or 29%; right base 3mm of 1.7cm or 18%; right lateral mid 1mm of 1.5 cm or 6% and the last one doesn't say location "pink lesion" two cores 4mm of 1.5cm or 27% also says "focal high-grade PIN noted. 

I appreciate your reading sources and will digest them.  Some I already have.  Tomorrow I meet with the oncologist to understand treatment options. 

Thanks, Denis

VascodaGama's picture
VascodaGama
Posts: 2957
Joined: Nov 2010

Denis,

From the last info you share above and due to your wish in pursuing AS, I would recommend you to investigate further the details of the biopsy, probably even getting a second opinion on the biopsy cores at a reliable laboratory, such as Johns Hopkins, Bostwick, etc. You can request your doctor to send the samples directly or just do it yourself by courier. Where do you live?

My lay interpretation on the data is that the "Pink" cores refer to needle(s) taken from a lesion identified in an image study. It could have been from the MRI or from a collor Doppler used in an exam done before the biopsy or found during TRUS. The finding maybe commented/located in the MRI report (?). Another registered comment that deserves attention is the "focal high-grade PIN". This refers to the finding of abnormal cells that are judged not cancerous but that it may turn into cancer in the future.
The cores found with high volume are at the base in both lobes (right and left) which area is close to the bladder (the bladder seats on the prostate base) and prune to invasion of the delicate sphincter. There is no indication of positive cores at the apex (closer to the colon) so that a negative DRE could be expected.

I wonder if you had any urination issue? Tissues at the base (cancer) could have grown and be squeezing the urethra or the bladder wall which lead to urine retention/urgency. Can you share more details about your initial PSA tests and the reason for having them. What made you to do a biopsy? Any symptom?

Here is a link regarding the second opinion;

http://pathology.jhu.edu/department/services/secondopinion.cfm

Please note that I am not a doctor. My comments are from many years of researching PCa issues since I become a survivor and as a continuing patient.

Best wishes,

VG

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks again for the informative post.  My PSA has been hovering around 4 for a few years. Prostate exam indicated enlarged but smooth.  One year ago PSA was 4.1 and this year it was up to 4.6 or 7.  Urologist ordered high fidelity MRI, which showed an area of concern.  The biopsy was done using the MRI results and one positive core was in the area of concern I believe.  As to urination, I have noticed a weaker stream these last few years.  

Yesterday my wife and I decided to shift my care to Yale.  I really like the suggestion of redo of the needle biopsies.  While I say active surveillance is probably the route, that just me be my wishful thinking.  Yale's philosophy at my stage is increasing the confidence level of my situation and let that drive the treatment plan. 

As to your opinion/input; I find that you are not a doctor helpful.  You are ahead of me on this adventure and I appreciate your learnings and perspective.  I am steeped in the learning and research as we speak.  

Enjoy your day!  Denis

hopeful and opt...
Posts: 2218
Joined: Apr 2009

When a larger prostate places pressure on the urethea, more PSA is secreted, and so a higher PSA. 

I forget to mention , for AS another indicator is PSA/prostate ratio...........you want this to be less than 0.15

You mention life style..........heart healthy is prostate healthy...........I for one have stopped intake of dairy and and meat; others who post here follow a mediterranean diet.......exercise daily

Some books:

the china study...t. colin campbell

DVD...FORKSoverKNIVES

eat to live...joel .fuhrman, M.d.

any book by ornish

UCSF, nutrition and prostate cancer

https://www.ucsfhealth.org/education/nutrition_and_prostate_cancer/

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, I have been meatless for 20 years.  I am reading klotz book.  I have read two others and have Thrive, as the next book.   I am in the process of getting my records to Yale.  Next step is confirmation of disease stage.  A bit frustrated with the slowness of the medical system.  Patience, not my strong suit!  Thanks, Denis

hopeful and opt...
Posts: 2218
Joined: Apr 2009

-Dr. Google just told me that "Thrive" is a  weight loss system. Am I understanding right?  

-With Prostate Cancer, which is very slow growing, you will have plenty of time to develop patience.

-Research, research and research is very important. You are doing well. You may consider attending a local support group(s). USTOO is and organization that sponsors local support groups, worldwide. Google them.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, I have not started the Thrive book yet but will soon. It is about nutrition, exercise and stress reduction, according to the forward.  

Today I had a good round of golf with a good friend. I also chatted with another who is having his prostate removed this week.  And finally went for a long ride on my motorcycle.  My records have been sent to Yale, so hopefully can get that process going soon.  I am in a good place each day seems a little better.  I appreciate everyone's help!  Thanks, Denis

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

Diet has very little to no role in PCa, or most other cancers, for that matter.  Any suggested links are tenuous and reasonably suspect. PCa happens to vegans as often as it does to bacon addicts.  My brother is a Meagan, a meat-only eater, and suggests that we get onboard with vegtable rights.....  Many ancient Hindus wore masks to not inhale gnats, which they viewed as murder (Thoreau describes this in his American classic Walden).  It is a logical progression from where PC America is today.  I have not joined up, and myself have always eaten a balanced diet, rich especially in greens.  But I have had two cancers.  And what I ate had no role. 

A report several years ago said that truck drivers have higher PCa rates than other men, possibly due to "vibration," so I would avoid that motorcycle (after all, a "study" has "proved" that vibration is bad, and "causes" PCa).  And don't call on a cell phone, lest your brain rot out. I can recall when microwave ovens first became popular: many believed it would be the extermination of housewives throughout developed nations.  The largest compilation study regarding coronary heart disease in history was conducted jointly by Harvard and Cambridge Universities five years ago. It concluded that saturated fat has no (zero, undetectable) role in heart disease. None, nada.  But does one ever hear of changes to dietary suggestions in the US since its publication ?  Of course not, and neither will we, either.

http://articles.latimes.com/2013/oct/29/science/la-sci-sn-prostate-cancer-truck-driver-risk-20131029

http://www.cam.ac.uk/research/news/new-evidence-raises-questions-about-the-link-between-fatty-acids-and-heart-disease

"Saw Palmetto" has been a multi-billion dollar seller to avoid PCa for decades, but all of the best studies show it to be of zero (no) worth.   Most cancers are due to randomly corrupted cell replications, with diet and genetics having no role.  Not all, but some.  And yes, diet is established as having a role in some cancers, mostly colorectal.  Otherwise, we are dealing with the luck of the draw.   But if a food item or health practice gives a man some sense of "control," I am all for it.   I was fanatical about my health in my teens and 20s, and, like many guys at the time, bought Jim Fixx's books on runner health. He wrote bestsellers on how to jog to prevent heart attacks. I read these religiously, and ran 26 miles a week for years.  Then, at 52 years of age, Jim Fixx died of a heart attck while running !  The world authority on how to not have a heart attck by running, dies, young, of the same, while running.   No one could make this stuff up.

https://en.wikipedia.org/wiki/Jim_Fixx

max

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Read most of it last night.  No real surprises, fresh foods, fish and a boatload of supplements.  Not sure I trust an author who recommends supplements and then has a company that sells the supplements.  

I am a pescatarian, don't eat meat.  I am pretty active, walk 18 holes of golf most days.  I am in good shape, maybe 10 pounds above ideal weight. I take a multivitamin and a D , but really am not sure they help anything but the manufacturer's bottom line.  I am hoping Yale will have a nutritionist to help me. 

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi,

I know it helped my piece of mind to do a lot of reasearch on Pca and also the treatment modes.  When I knew what the disease is and how to treat it, it helped me select the best course of treatment for me.  Each person is different on their choices and thats OK.  There are a lot of good treatments available to help us deal with the disease.  My Urologist told me that I would not die from Pca but I know it might still be a long journey.  Good luck & study,study,study, knowledge is key.  Livin six months at a time..........................

Dave 3+4

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, Dave and I totally agree the more I know the more comfortable I feel.  I also want to be well informed when I meet with Yale docs. When my Urologist told me I was stymied and unable to ask intelligent questions. I wish you well on your journey. Denis

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I also eat as you do; some fish on occassion...no fried or oils, etc. A year ago, I had my B12 and D3 levels tested. Since my B12 was too low I now take 1000 mcg B-12 a few times a week......I also take 1000iu D3 daily.

My opinion is that less is better as far as supplements.  Some of them have a negative effect on health, for example selenium and vitamin E. There was a study, called "the select study" done a few years ago among 35,000 men to measure the postive effects of these supplements  , however the study was stopped midway, since the study showed that taking these supplements had a negative effect with respect to prostate cancer.

If you take a multiple vitamin, you may wish to consider taking a women's or childs multiple vitamin, since there is a good amount of vitamin e and I think selenium in men's multiple.

UCSF, nutrition and prostate cancer

https://www.ucsfhealth.org/education/nutrition_and_prostate_cancer/

 

 

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks I looked and will stop my multivitamin until I see the docs.  Be well. Denis

Grinder
Posts: 437
Joined: Mar 2017

Also I have noticed many men's supplements have Vit K in large doses... Vitamin K?! That's the blood clotting vitamin. There is plenty of natural K in kale, Brussels sprouts, broccoli, etc. Then after you OD on K they put you on blood thinners and tell you to stop eating salads, but never mention Vit K in supplements. So if you are dealing with DVThrombosis or Embolisms or clotting issues, avoid supplements with Vit K.

And stress... Stress takes energy away from the body's immune response and puts the body in fight or flight mode. It was never meant to last longer than the time it takes to escape danger, yet we live in it 24 hours a day. Then we are sick all the time as our bodies never return to normal including immune response. So, yeah, relaxation is important way of hitting the "reset" button for your immune system. I've yapped a lot about red meat too, but you don't have that problem, fortunately. Good for you, Dennis.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thrive, author, recommends no white food like rice bread, pasta, etc.  That is not going to be easy. 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I finally start delayed adjuvant radiation in a week and have a list of dietary restrictions. No beans or nuts, no carbonated or caffienated drinks (one cup of coffee allowed). And no vociferous veggies. No pickles or peppers like Peter Piper, and no cucumbers.  A few more I don't recall at the moment. The reason is so that my organs don't move around while under the beam. I am a meatasaurus anyway, and treat veggies as a side dish.  My wife sees veggies as the main course. She is one of those "soup and salad and bread sticks" people.  I rarely eat bread other than to hold a few slices of meat and cheese together long enough to get them to my mouth.  So this will be a departure from the norm for a couple months as we will be eating more stuff that I like and less of what she likes.

Anyway, I read somewhere that for radiation to destroy cancer cells requires "free radicals", so I should not take anti-oxidants during the treatment period.  Normally I take a fairly powerful multi-vitamin (NOT handsfulls of pills like some do).  So for the time that I am on radiation and the following months I bought a bottle of the cheapest vitamins I could find, primarily to be sure I get enough of the fundamental stuff like A, C, D and B-complex, without all the heavy antioxidants like vit-E, selenium and beta-carotiene.  Has anyone else heard of this anti-oxidant versus radiation therapy thing?  My RO never mentioned anything about it.  I figure it won't hurt to slack off the supplements anyway.

EDIT: My wife informs me that the veggies are CRUCIFEROUS, not vociferous.  I tend to think they are actually both.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

Rob,

There is a long-running debate at Lymphoma regarding use of anti-oxidants while on chemo.   The Journal articles disagree a bit, and as best I can gather, no concensus. None shows a STRONG linkage effecting efficacy, however.  

I asked my medical oncologist about my habit of drinking huge amounts of green tea (a major anti-oxidant source), and he replied, "Drink what you like, you need hydration."  He is Ivy-trained, and has 5 Board Certifications, among which are medical oncology, hematology, internal medicine, and two others.  I have read many times about people being told to eat whatever they would eat when on chemo, which frequently induces anorexia.  Better to get protein and calories from somewhere than to become so weak that you die is the reasoning.  Worry about 'fitness' later.  I had a dear friend in hospice 3 years ago, near the end.  Dying from PCa, after a 13 year fight.  We was semi-conscious, hadn't eaten in over a week (except fluids via IVs). Asked for a milk shake.  His daughter, an RN, objected, but allowed us to get him one.  She said, "Sugar will feed the cancer !"  Definitely the cruelist, stupidest comment I ever heard in my life.  He died the next day, but enjoyed the shake.  It all requires perspective.

Most medical oncologist recommend ending supplements when beginning chemo, but I am uncertain as regards radiation.  Perhaps this helps a little,

max

 

GeorgeG
Posts: 127
Joined: May 2017

Look into 3 Tesla endo rectal coil dynamic multi parametric MRI with contrast. It is the best imaging capability today to help assess the extent of your disease to help with an informed decision on AS. Imaging has been an issue in PC and before now not a very useful tool for diagnosis. It can also then be used to perform a fusion biopsy which guides the process to get the most useful information. I would not do AS without this process.

 

George

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, I hope it is not as painful as it is to say the title of that MRI!  ;-)

GeorgeG
Posts: 127
Joined: May 2017

I did not find the MRi or the biopsy to be very painful. I even opted out of the sedation during the MRI. The only thing that was a little unsettling was the ejaculate for a week or so after the biopsy but then that cleared up and everything was back to normal.

 

George

airborne72's picture
airborne72
Posts: 273
Joined: Sep 2012

Denis:

This has been an interesting thread so I feel compelled to add my opinion.  What causes prostate cancer?  It's a combination of genetics (totally out of our control) and lifestyle (diet, rest, exercise + exposures).  The second half of this equation is where we can exert influence, but are our actions actually therapuetic?  Meat or no meat.  No white bread.  Eat lots of tomatoes.  Don't wear tight underwear.  Always wear an athletic supporter.  Increase the frequency of ejaculation.  And the list continues ad nauseum.

When the cause of and the cure for prostate cancer is discovered the public will quickly be made aware.  In the meantime I subscribe to the "all things in balance" approach, with an exception for cold beer.

Now, back to the primary reason for my post.  I wanted to share my prostate cancer detection and quantification process, vintage 2009.  I had no baseline PSA.  My first was 17 and that was detected during a routine physical exam that I underwent in preparation for a spinal fusion surgery.  Prostate cancer trumped back pain so all efforts were redirected to it.  Very soon after that I had a DRE with minimal results and was then scheduled for a rectal biopsy.  A few days later after completing a partial colon cleanse I had the needle biopsy.  The urologist used the Michael Jackson drug (proponol?).  I was down quickly and up quickly.  Unfortunately, the residual numbing from the drug lasted just long enough for me to make it back to my car and get stuck in metropolitan, afternoon traffic.  I felt like some one had kicked me in the nuts and inserted a broom handle up my anus.  I had prostate biopsy road rage!  That pain dissipated after about 8 hours.

My path results came back and indicated that I had just about all quadrants contaminated.  Surgery was recommended by all urologists that I visited (got three different opinions) so that is what I did.  The surgeon took out a wide margin and said that as a consequence I would not need chemo or radiation.  In that regard I was lucky, but my surgery was not without complications - thank you Da Vinci robot.

Short version: the robot discharged a "c Clip" inside my bladder.  That piece of plastic eventually (60 days) migrated down my ureter and out of my penis, leaving a trail of scar tissue.  On two separate ocassions I had to undergo a "cysto something" procedure to remove scar tissue (akin to a roto rooter).  I could not urinate prior to the procedures and then afterward I was on fire when I did empty my bladder.  I kept telling myself that I was cancer free and should be happy but I was temporarily challenged in getting my mind right. 

Is there anything in this post that is a take-away for Denis?  Sure.  Get multiple opinions.  Don't assume that the newest, highest tech device is best.  Seek treatment at a facility that is not a research/educational facility if you want personal attention.  Make a list of all the bad contingencies that can result from a simple surgery.  Remain flexible and patient.  Always maintain a positive attitude and a sense of humor.  And, consider the remote possibility that you had occupational exposure living in a submarine - that's something to think about.

Jim

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Jim thanks for your experience, it is in others experience that I get informed.  I plan multiple opinions and know I have time due to my early detection.  Hmm, sitting on nuclear torpedos, being inches away from Posideon missile MRVS, being on a nuclear submarine...   I choose to not worry about how I got it, rather what is the next right thing that I need to do.  

I do have the philosophy/belief that the better shape I am in the easier it will be for my body and mind to deal with what ever the future holds.  Again thanks, buddy!  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

I had wondered a bit about your moniker, Sub, but did not think to ask.  You might or might not know from my history here that I too was a 'bubble-head,' always fast attack ('long and black, and never come back'; 'SSN = Saturdays, Sundays, and Nights'). I knew nukes who did a deployment, and the remainder of the year were mostly port-and-starboard duty in port. Some of them got to go home around 45 days that entire calendar year.  Like you, I too worked on warheads underway, and was also the ship's Tritium Monitor guy, a task I hated due to potential 'inhalation'.....

We all wore radiation monitoring devices of course, and the Navy claimed less radiation exposure underway than when walking the beach.  I guess I believe that line.

After 6 years active, I got an engineering job backfitting Tomahawk VLS missiles on Los Angeles Class fast attacks.  Part of the time visiting boats, the remainder of the time writing maintenance proceedures for the sailors to use.  Six months after starting that job, I was run over by a car and required two years rehab.   My crawling around in submarine days ended with that accident.   I've done many different sorts of work since, but (similiar to you) cannot attribute my two cancers to sub duty, there is just no established link.   Whole-body advance Lymphoma, Stage II prostate, and my chest cavity caved in and a leg nearly ripped off (knee cap found in my pant's leg, for instance). Loss of 1/3 of my lung function from fibrosis, probably induced from one of the chemo drugs. Serious neuropathy (numb hands and feet) also from a chemo drug.  We can only give thanks and move on.   My fundamental attitude is thanksgiving: thanks for the medical tools and drugs that keep us alive, to fight another day, face another battle. 

My orthopedic surgeon was joking around with me one day, about what a basket case I was (we were close friends by that point).  He was a Marine Corps Reservist, who had done a tour as a trauma surgeon in Viet Nam.   I said, "Man, you were in Nam !  I know you've seen way worse than me !" 

He got serious, and even teared up slightly, and replied:  "I've seen more fractures in a man before, but never in one who lived."  I never forgot that, or how he said it.

Bless your memories; it's all good.  I would not trade my experiences for anything. To me, hell would be being an insurance agent, or some functionary behind a desk in a cubical somewhere,

max

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Max thanks for your story. You have traveled quite a road.  We are fortunate people to have had the adventures we had.  Now we have a new adventure.  I am waiting for a call from Yale and waiting sucks!!  Be well.  Denis

Grinder
Posts: 437
Joined: Mar 2017

".  We can only give thanks and move on.   My fundamental attitude is thanksgiving: thanks for the medical tools and drugs that keep us alive, to fight another day, face another battle. "

Amen, brother. Respect.

Right now in Venezuela, you can't get common remedies, much less complicated procedures. We have a lot to be grateful for.

GeorgeG
Posts: 127
Joined: May 2017

Research shows that there is a stronger link to diet with PC than some other cancers so you are right to consider this in your plan. Some argue that it doesn't matter once you have PC but I don't want to create a competing mortality risk while I'm working my present problem.  Excercises is always a good idea For many reasons. Make sure to work to keep your mind right, the mind body connection is very strong and you cannot get maximum healing without this In my opinion. This is hard at first as you assimilate your new reality but it can be done. Better diet and exercise took me about a week. Getting my mind back on track took longer But I am there now. Just remember balance, mega vitamins for instance can do more harm than good if not careful.

 

George

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, George and I agree. I am very active and eat well.  As to mind-body, I suggest they are critical and I want to live well as many years as are meant to be.  As to vitamins, I am going to wait and see what Yale recommends. Be well. Denis

hopeful and opt...
Posts: 2218
Joined: Apr 2009

US TOO International publishes a newsletter each month called "HOT SHEET" There is a lot of excellent information in the publications.  www.ustoo.org

 

In the July 2017 Hot Sheet there is an article on Page 3 by Dr. Moyad (who is world renowned) "testostenone Blood test and weight loss for prognosis"

Paraphrasing some of Dr. Moyad's comments:

Basically a low total testosterone blood level at the time of diagnosis can be one characteristic of a more aggressive tumor. Men with larger weight/waist have lower testosterone. It is important to maintain a healthy weight or lose weight.

It also appears that men carrying low testosterone while on active surveillance could have a higher risk for prostate cancer progression and the need for treatment.

................................

With respect to free radicals and radiation, I also read that it is not a good idea to take these supplements, and others at this forum have reported this.

 

 

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks and I am at a good weight and activity level.  A quality of life is important to me.  Denis

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Update:  I have an appointment at Yale, they already have my records, MRI and are getting biopsy slides to do a second pathology report.  I like having a next step. Denis

Subscribe to Comments for "newly diagnosed Gleason 6 65 years old"